Remembering another PD warrior | Living Well with Parkinsons Disease

By Sheryl Jedlinski

Early this month, the Parkinson’s disease community lost yet another long-time patient advocate and I lost a friend of more than 20 years. Linda Herman and I met on line shortly after I was diagnosed with Parkinson’s in 1999. Only four years into her own journey, Linda had already made a name for herself as a dedicated patient advocate. 

Volunteering as a research subject, Linda worked with doctors, scientists, and fellow patients, to raise awareness and advance the understanding of Parkinson’s. Her efforts helped identify new ways of treating this condition, and learning if drugs being developed are well-tolerated and effective. Knowledge gained through her work not only benefitted those already living with Parkinson’s, but also those who may be diagnosed with it down the road.

Although Linda lived near Buffalo, New York and I in suburban Chicago, we worked on many projects together, promoting greater patient participation and retention in clinical trials. Linda also managed an interactive treatment database that gave stakeholders on-line access to current information about therapies in the pipeline and clinical trials.

When we couldn’t sleep, we’d pass the night playing on-line word games and sharing stories and photographs of our families, especially our granddaughters, around whom our worlds revolve. I miss her voice, which carried me through so many sad and joyful times. In the last months of her life, Linda couldn’t make herself understood so it fell to me to call her and babble on in the hope that she might recognize my voice and know that I hadn’t forgotten her.

Sadly, more and more of my time is spent bearing witness to friends whose lives were cut short by Parkinson’s. Memories help us hold on to what we can of those we’ve lost and the life we shared with them. It is in the lives and minds of those who come after us that we continue to live on as we are remembered. As long as they live, we too shall live, for we are now a part of them.

A Parkinson’s warrior, Linda didn’t know the meaning of the word quit, and put up a good fight to her very last breath. She leaves behind her husband, two adult children, a young granddaughter, and many friends and relatives.

Rest in peace, dear friend; know that you are missed and your work continues on.

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